“All aspects of life are changed when you or someone in your family gets ME/CFS, including finance, food, social activities, friendships can change, the ability to have children (we can’t), community involvements stop.

There can be a feeling of isolation as the world evolves around you, while you feel that nothing ever changes. Those who get sick may feel guilty because they can’t “contribute”, those who are close who look on see a person who is but a shadow of what they were.

We have our moments of frustration. We occasionally allow ourselves to have a good moan, but this achieves nothing apart from getting it off our chests. We have had to put systems in place to manage the energy levels. Just as you can spend money only once we can use energy only once so we have to budget how it is spent. If we do something today, even as simple as having a friend over, then we can do nothing for the next few days.”

Thanks Paul for you blog post and for contributing to our central list here. So glad you’ve had such a postive reaction and great to be doing your bit to raise awareness. It’s a ripple effect I think. Thanks again.
Rachel